Herceptin / Tykerb Share your experiences or ask questions about Herceptin or Tykerb |
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04-30-2007, 05:19 AM
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#1
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Senior Member
Join Date: Oct 2005
Location: Sydney Australia
Posts: 105
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Tykerb or not Tykerb, that is the question (tonight, anyhow)
Hi, I hope some one can help me in asap. It is Mon night at 9pm over here in Oz, and I go to the Onc who is one of two dispensers of Tykerb EAP in my local area in 12 hours. I will look on thw site before I leave in the morning.
Today i had a CT scan and my 2nd recurrence on 12th March 07 (> 3cm pleural effusion in Rt Upper Lobe) has been completely resolved. GREAT!! However, there is "a tiny low density in the inferior tip of the rt lobe of the liver (may be a cyst) but should be monitored". I hope to talk the Onc (whom i have never met) into putting me on the Tykerb EAP while it still exists and will be for free, rather than wait for it to be monitored and when i need Tykerb later, it will not be available on the EAP and will also not be on the PBS (Oz equivalent of FDA) until later on. Can anyone suggest anything else? Or am I panicking? xxxRoz
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04-30-2007, 01:29 PM
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#2
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Senior Member
Join Date: Dec 2005
Location: Illinois
Posts: 327
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What is the Tykerb EAP? They delivereded my tykerb right to my front door.
__________________
Jan04: Bilateral Mastectomy at age 28
Initial DX: Left Breast: IDC 2cm, Grade 3, HER2+3, 0 Nodes +, ER/PR-. Right Breast: Extensive DCIS ER-/PR+; Stage 1-2a
Feb04-Apr04: 4 AC, dose dense
Aug 04: 4 Taxotere
Dec 05: Bone and Liver METS; Stage 4. Carboplatin/Taxol/Herceptin. DX with Li-Fraumeni Syndrome
Apr 06: NED, maintenance Herceptin
Apr 07: CA1503=14; masses in liver; Xeloda/Tykerb
Nov 07: NED, Tykerb maintenance
Sept 08: Liver mets again, on Tykerb/Xeloda again, CA=19 and 27
Nov 08: Progression, Tykerb/Gemzar, CA=25
Dec 08: Progression, Herceptin/Navelbine, CA=40, 57, and 130
Jan 09: Progression in bone, recession in liver, Herceptin/Carbo/Abraxane CA=135
June 09: CA27/29=24, chemo break
Sept 09: Progression, CA=24, waiting on clinical trial (4 weeks no treatment)
Nov 09: now have brain mets, trial "on hold", getting 14 WBR treatments starting 11/2/09
Dec 09: possible start on p53 trial
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04-30-2007, 04:48 PM
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#3
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Senior Member
Join Date: Apr 2007
Location: Shaker Heights, Ohio
Posts: 86
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Roz, I hope you get this:
Yess,
I think you should go for it! If you can get Tykerb for free now, I would not wait.
It is a lot of hassle to get assistance and the insurance companies probably don't want to pay since it is so expensive.
I'm hoping to take it along with the Xeloda as a preventive measure to keep me in remission.
Good luck, let us know how it went,
Odette
__________________
May 18, 2006 Age 52,
Diagnosed infiltrating ductal carcinoma
er/pr- HER2 + 3.9 by FISH
June-August 2006 AC chemo
August-October 2006 Taxotere + Herceptin
November 18, 2006 Mastectomy 16 involved lymph nodes
Jan 2, 2007 start radiation
Stage IV, Jan 12, 2007 recurrence in cervical lymph nodes while on Herceptin, stopped Herceptin
Rad oncologist extended the radiation field, good response
Started Tykerb Xeloda on beginning of May 2007
Progression to lungs and conglomerate lymphadenopathy July 2007
Undecided about next treatment
'One does not get to choose one's adventures'
I'm experimenting with my diet, using green tea, flax seed curry and olive oil
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05-01-2007, 03:40 AM
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#4
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Senior Member
Join Date: Oct 2005
Location: Sydney Australia
Posts: 105
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Lucky you Julierene! I drove across town, it took me 1 hour door to door to get to the dispensing hospital. But they have decided today to proceed with enrolling me in EAP. Extended Access Program is the name for the Tykerb trial in countries where it is not available on the national drug list. There are several sites in Australia, but they are wondering how much longer the trial will be available now Tykerb has moved onto the FDA in America. So far so good. My Tykerb onc said that at this stage they will regard my liver spot as cancer. The scan will go before the "research group" who approve the enrolment on the program, so I still have that hurdle to jump before getting on. They may do some examination of the liver to determine the nature of the spot, or they may get me on and do tests in 3 months. Not sure what is best really, but will go with the flow at this stage.
Odette, are you using curcumin? It seems to be a good antitumour growth product, I am interested in starting it. Cheers, Roz
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